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Spencer Cox, an AIDS activist whose work with a cadre of lay scientists helped push innovative antiretroviral drugs to market, creating the first effective drug protocols to combat the syndrome, died on Tuesday in Manhattan. He was 44.

A young Mr. Cox can be seen in the documentary about Act Up, “How to Survive a Plague.” In recent years he wrote on AIDS issues for POZ and other publications, and founded a short-lived organization called the Medius Institute for Gay Men’s Health, which was concerned with issues faced by those growing older with AIDS, among them loneliness, depression and substance abuse.

Seroconverted: Early 80sTested & confirmed what I already knew: early 90s

Current regimen: Atripla. Last regimen: Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky )Past regimensFun stuff (in the past): HAV/HBV, crypto, shingles, AIDS, PCP

I was sorry to see this, I never met Spencer but Peter, Andy and Tim all knew him and my condolences to all his loved ones. He posted on Facebook I believe on their walls. So close on the heels of the How to Survive a Plague documentary that came out this year, it is particularly sad. He did so very much for those of us alive today with a virus we were told by all would leave us dead very soon. Thanks to Spencer Cox, RIP good man.

Jody

Logged

"Wake up to find out that you are the eyes of the world". "Try to discover that you are the song that the morning brings."

that is very sad news indeed. little scary too for some reason. im 42 , so 44 hits close to home as well. i guess you think the meds are supposed to keep the virus at bay. i dont know all the circumstances, but still hard to hear. RIP

To have done so very much to insure medication was available to us, and to then stop taking it. I will never pretend to know the man's demons and his struggles. But we couldn't afford to lose him. Our nest generation of activists is missing.

Logged

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

Very sad, indeed. I had just read about his work not that long ago. We've seen deaths of fairly young, high profile, poz people recently. The causes of some of their deaths were not discussed, leading many to speculate whether they died, even being on meds and having their virus suppressed.

An awful situation, especially here at the holidays. My condolences to his family and everyone who knew him.

It's very sad and tragic. Throughout my 27 years of living with HIV, those that were dealing with issues of drug abuse ( and HIV)- ( primarily meth) or alcoholism, never made it. They all died too young, and senselessly.

Seroconverted: Early 80sTested & confirmed what I already knew: early 90s

Current regimen: Atripla. Last regimen: Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky )Past regimensFun stuff (in the past): HAV/HBV, crypto, shingles, AIDS, PCP

Not to hijack, but it is relevant -- I've personally known five long term survivors take their own lives in the past five years or so. Some were due to drugs, others were not, or if they were I didn't know the details. Some people just stop their HIV meds, having grown weary of +20 years of bullshit. Sadly this is rarely talked about. I mean, where's the front page article about this on POZ magazine? If I know this many people, and then there's this super VIP activist as discussed in this thread, wouldn't you say that this is a bit of a crisis? In fact, one of the people I know that stopped their meds was a mental health professional. I mean what really does that say? Some members of my LTS support group thought the issue was so important we raised it with the director of the largest HIV clinic in the city and never got a response.

And yes, I think part of it is going over the 40 year old mark. I also have a HIV-negative friend who fits this same pattern of freaking out over that age mark and starting a severe drug addiction late in life, when previous to that the most he ever did was drink alcohol in moderation. For the life of me I'm surprised he's not become HIV+ -- but then really all he does sexually is oral sex. Oh, and also remember that NY Times article on the HIV-negative 40-something man who was writing a book about gay men and aging and he also committed suicide -- forget his name but it was in the past year.

Dunno, it just makes me really, really angry that everyone focuses on cd4 counts and viral loads and new drugs in the pipeline. Ever since I've been on this forum I've repeatedly pointed out the high stats for depression in HIV+ patients, but from personal experience very few people actually take the time to do more than pop a SSRI or some other pill, instead of going to support groups or better yet engaging in consistent talk therapy.

Sorry for the rant, but I'm just tired of it. And I'm tired of the 40-year olds that get into meth, and then recover from it, but then seem to be hesitant to speak out more than one or twice about what they went through. It's not an easy issue because at the end of the day someone is going to do what they want to do -- you can't stand over someone and force them to take their meds, or force them to avoid going for another fix a the dealer's house, etc. But certainly the issue can be raised to a higher degree in terms of awareness. I can't even say I know what the statistics are, or if there are any collected, on this issue in any more than vague terms.

Not to hijack, but it is relevant -- I've personally known five long term survivors take their own lives in the past five years or so. Some were due to drugs, others were not, or if they were I didn't know the details. Some people just stop their HIV meds, having grown weary of +20 years of bullshit. Sadly this is rarely talked about. I mean, where's the front page article about this on POZ magazine? If I know this many people, and then there's this super VIP activist as discussed in this thread, wouldn't you say that this is a bit of a crisis. In fact, one of the people I know that stopped their meds was a mental health professional. I mean what really does that say?

And yes, I think part of it is going over the 40 year old mark. I also have a HIV-negative friend who fits this same pattern of freaking out over that age mark and starting a severe drug addiction late in life, when previous to that the most he ever did was drink alcohol in moderation. For the life of me I'm surprised he's not become HIV+ -- but then really all he does sexually is oral sex.

Dunno, it just makes me really, really angry that everyone focuses on cd4 counts and viral loads and new drugs in the pipeline. Ever since I've been on this forum I've repeatedly pointed out the high stats for depression in HIV+ patients, but from personal experience very few people actually take the time to do more than pop a SSRI or some other pill, instead of going to support groups or better yet engaging in consistent talk therapy.

Sorry for the rant, but I'm just tired of it. And I'm tired of the 40-year olds that get into meth, and then recover from it, but then seem to be hesitant to speak out more than one or twice about what they went through.

I'm not a LTS but I agree with everything on this post. This HAS to be discussed more clearly, and even for the younger pozzies like me, who want to remain optimistic about their future.

Some people are already prone to depression and the HIV only worsens that. Some begin to get depressed because of the virus. But I also blame the government and doctors who are not doing much in trying to erase the stigma associated with it. SO much misinformation that is still being spread, it's appalling. Some people lose hope, isolate themselves from society, start taking a shitload of pills for all kinds of mental health issues...its just so very sad, especially in this case.

Not to hijack, but it is relevant -- I've personally known five long term survivors take their own lives in the past five years or so. Some were due to drugs, others were not, or if they were I didn't know the details. Some people just stop their HIV meds, having grown weary of +20 years of bullshit. Sadly this is rarely talked about. I mean, where's the front page article about this on POZ magazine? If I know this many people, and then there's this super VIP activist as discussed in this thread, wouldn't you say that this is a bit of a crisis. In fact, one of the people I know that stopped their meds was a mental health professional. I mean what really does that say?

And yes, I think part of it is going over the 40 year old mark. I also have a HIV-negative friend who fits this same pattern of freaking out over that age mark and starting a severe drug addiction late in life, when previous to that the most he ever did was drink alcohol in moderation. For the life of me I'm surprised he's not become HIV+ -- but then really all he does sexually is oral sex.

Dunno, it just makes me really, really angry that everyone focuses on cd4 counts and viral loads and new drugs in the pipeline. Ever since I've been on this forum I've repeatedly pointed out the high stats for depression in HIV+ patients, but from personal experience very few people actually take the time to do more than pop a SSRI or some other pill, instead of going to support groups or better yet engaging in consistent talk therapy.

Sorry for the rant, but I'm just tired of it. And I'm tired of the 40-year olds that get into meth, and then recover from it, but then seem to be hesitant to speak out more than one or twice about what they went through.

^This deserves another sticky so that we have a constant reminder of how easy it is to forget certain issues many members of the poz community are often faced and struggle to deal with.

Seroconverted: Early 80sTested & confirmed what I already knew: early 90s

Current regimen: Atripla. Last regimen: Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky )Past regimensFun stuff (in the past): HAV/HBV, crypto, shingles, AIDS, PCP

I understand the mental issues. I've never discussed it here just because its more personal than even discussing HIV. I've been dealing with depression/isolation for some time which has gotten worse in that past couple years.

I had surgery years ago and got hooked on the vicodin, i could have stopped when my dr stopped prescribing, but then i would order online. Now i'm always isolated these days and my only friend i hang with is vicodin, tramadol and ambien.

All this was good until about 3 weeks ago when the online folks stopped sending my pills. i'm going thru moderate withdrawls via a tapper method, but its very difficult. i called a suboxone treatment location and they are unable to see me till the 14th, sort of defeats the purpose for the withdrawl help, soon i will run out of my stache and have to deal with it in a rough way.

i do need help mentally i no longer feel like myself these days. Always on the edge, always have attitude problems, very difficult to deal with co-workers. My plan is to get some help to help pull me out of this funk.

If i go to this suboxone clinic, then i have to do intensive outpatient therapy versus going inpatient. i don't think i can deal with the 12 step process and religious process some of these places do

Mike, I'm glad you share this with us -- that's SO important to do, even in the absence of a professional. Life with HIV is long term, and we often think of it in the opposite way, which is why it's so important to get a hold on these issues and resolve them, even though it's really hard work and a very long road. Always remember you have value, to yourself and others. I have no suggestion what you should do, as it seems so much pre-dates hour HIV diagnosis, but the diagnosis just exasperated your situation, then on top of that you have your neuropathy issues -- I'm sure it's mentally overwhelming.

I know it's hard when you're working full time, but you need to find a way to get a therapist and/or psychiatrist to work up a full treatment plan long term. You have a long life ahead of you and wasting years isolating yourself you will one day REALLY REALLY regret. I know this personally now that I find my mobility issues what they are, and it's even an effort to do a whole day out at a museum for example.

Anyway, please keep discussing this on the forum even if it's by starting another thread. I know the forum can seem harsh in tenor at times, but people mean well when it's someone in a crisis. Hoping the best for you.

Miss P, this is absolutely relevant and I appreciate the discussion. While I am a very new pozzy, I have to say that it is the mental impact (anxiety, depression, etc.) that scares me the most.

I have had two periods (each one to two years) in my life where I was depressed and anxious enough to go on meds. I did go to therapy, both group and individual, and worked hard at trying to improve my situation - but at the time things were pretty dark. The statistics are that if you have had depression once you are much more likely to get it again - which is part of the reason I am sensitive to it now.

In my pre-poz days, I knew one person that was open about being poz. He was somewhere between an acquaintance and a friend. He lived in my neighborhood, we had a few mutual friends and we would stop and talk when we saw each other, but we weren't close beyond that. He was mid 40s or so, attractive, relatively successful, was close to his family (particularly his mom)...and one day out of the blue he killed himself. When I found out that I was poz - the only connection I could make to anyone else that was poz, was him and he had killed himself - and to this day it scares me.

Mikey, Thank you for sharing your situation. I respect you doing what you need to do, and agree with Miss P - it is really important to remember that you do have value to yourself and others. I wish you well.

I haven't talked about much publicly on the forum, but maybe mentioned it in passing only because focusing on it is uncomfortable. But now time has passed, so I will say that my best friend who had been HIV+ since the 80's, and this was someone I did everything with -- in fact if it hadn't been for the 20 year age difference I am sure it would have been a sexual relationship and/or partnership. We had so much in common in terms of interests. He was the smartest man I've ever met (graduated from high school two years early), etc. He was one of those very rare birds that was fairly void of any drama (and I'm, of course, the exact opposite so oddly it worked in that he tempered me).

Anyway, at the end of March he passed away. His HIV stats were fine, though he'd just learned he was diabetic. I'm not clear on everything that went on that last month because he completely shut himself off to everyone -- he wouldn't talk on the phone and would only answer email. It was a way of telling others he had things under control but I constantly suspected that was not the case. I'm fairly sure he stopped his bi-polar meds, or that they stopped working, and I know he only got refills from his GP and didn't go to a therapist. To put in in perspective -- we went from doing a 20-course Szechuan private tasting, to a Sibelius symphony by the Philadelphia Orchestra, to a birthday dinner from me at one of the new "in" Abruzzo Italian restaurants to a month later his being gone from my life. It was devastating, and still is when I allow myself to think about.

In the end I'm not even sure if it makes me mad -- I don't know what he was thinking or what he saw his circumstances as being, etc. So I just accept it I suppose. But in the larger scheme of things like I said I've know so many others in the past five years resort to suicide -- some had drug issues, others didn't or I don't know the specifics. One guy went as far as to box up all of his belongings in his apartment and label everything so that his sister could have an easier time disposing of it all. Can you imagine the type of planning that would go into that? And the though process during the many weeks it would take to do such a thing?

Anyway, this technically doesn't scare me as frankly I have never been prone to ponder suicide. It's as if it's an alien thought process to me, but in the end I'm not sure I can judge someone else that feels the need to do this. It's just part of this larger picture where if you think HIV has stigma, for so many people psychotherapy has an even larger stigma, like they think it will only open up an even larger can of worms than the already have open.

Props to Miss P and JK for addressing this issue . HIV is a tough enough thing to deal with and we now the ones who fare best are the ones that find a way to deal with it and to be diligent about doctors appointments and treatment when the day comes that you need it .

Not nearly enough attention is spent on our emotional well being as there is on CD4 counts viral loads . Its time to be honest with ourselves and realize the hard truths , and those truths are we should be treating our emotional health as diligently as we do our battered immune systems .

I'm speaking about this because its something I ignored far too long and I can tell you without a shadow of a doubt that depression and untreated anxiety can be as deadly as aids for some of us . I went far too long assuming depression was something to just endure and power through but , I was wrong and in the end it almost killed me .

This is a support forum , so I suggest that when we see denial and read about depression in this forum we should call it out ... and when somebody suggest therapy told to talk to your doctor or says to you go get counseling we should see it as compassion and support and not as a personal failing .

Not nearly enough attention is spent on our emotional well being as there is on CD4 counts viral loads . Its time to be honest with ourselves and realize the hard truths , and those truths are we should be treating our emotional health as diligently as we do our battered immune systems .

Yes

This virus, disease, condition sucks. It's hard. It seems there is so much attention paid to how this drug or that drug is great and is basically the cure to all that ails you and how if you take this pill everything is going to be ok. You see it with the newly diagnosed, how they talk about how it's all controllable with one new drug (AND I was just the same too...god how shit bites you in the ass)

After awhile, you just start to deal and realize this shit is hard. Ya, the doctors tell you to take your meds but that is about as much advise as they can muster. Since I have become positive I have gone through three therapist trying to find someone that understands what the fuck I am talking about. Even in a large city it's hard to find a therapist that understands what it's like having HiV.

The constant doctors appointment, the constant scopes up your ass looking for cancer, wondering who I can and can't tell, worried that I may spread it to my partner. Everything can not be solved with one pill.

One thing I have learned is that judgement about other is bullshit. Stopping your meds, who knows what he was going through. I hope he has peace.

Over the course of a decade, I have had four therapists. I was fortunate with the first one when I was still living in NYC. He was a gay man, but not HIV-positive, but I gathered much of his clientele was HIV+ (I was referred to him by my HIV specialist, as this therapist also specialized in sleep issues which was what I was having, but it was really caused by anxiety, which I was later diagnosed as having -- but not depression)

Once I went on disability I had to switch doctors and only went to a pill dispensing psychopharmacologist (is that the word?). I didn't begin again with actual therapy until I moved to Philadelphia, and by that time I definitely had severe depression on top of generalized anxiety issues. My first therapist where I went was only so-so, but he left soon for another position. My second on was much better, but after a couple of years he left to finish his masters and PhD. So now I'm on my fourth therapist, who is a young woman who is part-time as she's also finishing her advanced studies. Anyway, my larger point is that my experience tells me that while after an initial diagnosis it may be beneficial to have someone that is familiar with HIV, but in the end any proper therapist should be able to handle whatever it is you throw at them. HIV has some special qualities, but it's also not so different than any other patient dealing with a life-threatening disease. You're just not going to find many therapists who are also dealing with HIV themselves, so I wouldn't use that as an excuse not to engage in long-term therapy if you need it.

I hope that makes sense. Therapy is a lot of work, and it's not just the quality of the therapist but it's also the amount of focus the patient brings to each session. And one thing I have learned, is that in terms of depression it comes and goes -- really deep depression is of course dangerous, but the other sort is something I think an HIV patient has to learn to live with somewhat, always being aware of it and with cognitive behavioral techniques you can learn to ameliorate the symptoms, hopefully without the aid of medication.

Now that HIV medications will allow most of us to live much longer lives, the mental aspect of the disease becomes a primary element in disease management, and unfortunately not every infectious disease and/or GP doctor focuses on this.

Some people suffer from chronic depression, which I understand is a very difficult situation, difficult to diagnose and even more difficult to treat and cure.

However, I do think in some cases people just get overdramatic. Sure, it is hard, no question about that, but it's not the end of the world. If you keep taking your meds and they don't give any nasty side effects (most don't), you are healthy, correct?

So you're not gonna die, at least not from this. So that's settled. Stigma? Yeah it is hard but many other people suffer stigma...hell, HIV- gay people suffer from stigma every day, that is just the world and the society we live in. It may be getting better but it's a long way to go and we just have to develop thick skin and deal with this.

Pills every day? My stepfather takes them for his heart condition. Diabetics take insulin every day. I had a distant relative who was a hemophiliac...that's the nastiest thing I've ever seen. And people who have cancer never know if they'll be able to make it or not. You just have to open the newspaper on any given day to see how many people around the world are suffering all the time, every second.

Health is the most important thing we have and these new pills allow us this luxury that a lot of people who got infected in the 80's and 90's couldn't enjoy. And 5 years from now there will be even better pills and, who knows, maybe less damaging treatments and treatments that eventually may lead to a complete cure.

I know it's easier said than done, and I know people like Spencer or Miss P, who have lived with this for many years, have gone through terrible things due to the drugs that were available back then, but I still think people need to look on the bright side all the time. Once they get infected, they feel they are damaged goods, walking cliches, nasty people who did bad things and now are paying for it...but it's just a virus that ANYONE can get. Anyone. And we are just humans, we make mistakes all the time. We shouldn't be too hard on ourselves.

That's how I live my life. I do have bad days, but that happens to everyone.

My ID doc sent me to a therapist soon after my diagnosis. I have insurance thru my work, but they all charge you like going to a specialist, so i was paying 40.00 everytime i walked thru the door.

I went to the office 3 times before i even got to see a psychologist. first time was paperwork, second time i had to speak to someone that was over the office, then third time i finally got to speak to the therapist. i wasn't happy with him at the point, so 120.00 later i just stop going. He wanted to see me 3 or 4 times a week.

I didn't feel at that point he had my 'own' interests in mind. its the same issue with these treatment centers. They want you to go inpatient for 30, 60, 90 days and shove religion and 12 step program down your throat. One treatment center has their program online and 3 of the 12 'lessons' is on religion and sexual deviance, sexual diseases and etc.

i found a group of psychiatrists and psychologist that do intensive outpatient treatment using subxone, this way you can still work, but you have to agree to come in mon-fri for initial week, then 2 or three times week there after for about a month or two. You acually see a medical doctor in the beginning and see a psychiatrist as well to help deal with yourself. its all expensive no matter how you look at it, even with insurance. Of course i dont see them till the 14th, i may not need the subxone by then

So that i dont feel like i Hijacked this thread too much, I will say it again RIP Spencer Cox.

that is very sad news indeed. little scary too for some reason. im 42 , so 44 hits close to home as well. i guess you think the meds are supposed to keep the virus at bay. i dont know all the circumstances, but still hard to hear. RIP

Mikey it seems the way you are living is limiting your perspective and clouding issues.

THE MEDS KEEP THE VIRUS AT BAY. Cox stopped taking HAART. Its thats cut and dry.

Its irrational and unhealthy, your initial reaction to this news story. It reveals something about your state of mind. I agree with Miss P and others that you need to take the bull by the horns and get some fresh clear input into how you see and what you think - a therapist and/or get mixed up into some more social contacts....

Logged

“From each, according to his ability; to each, according to his need” 1875 K Marx

Meech, if you had read my inital response, i was speaking off the cuff. I said that i hadn't read up on all the circumstances of what happened, very few, if any, news stories mentioned this tidbit of information that he had stopped taking his meds. So the lack of reading all the news stories has nothing to do with the way i'm living, whatever that means.

I understand the mental issues. I've never discussed it here just because its more personal than even discussing HIV. I've been dealing with depression/isolation for some time which has gotten worse in that past couple years.

I had surgery years ago and got hooked on the vicodin, i could have stopped when my dr stopped prescribing, but then i would order online. Now i'm always isolated these days and my only friend i hang with is vicodin, tramadol and ambien.

I was referring to this daily existence. I'm sorry if it seemed that I was somehow dissing you. In fact I said the above because I am worried.

It seems to me that previously I read between the lines on older posts of yours and was wondering if you had ambivalence about HIV medicine.

So thats what is seemed like and yes, percisely because that is the initial jag you took - about Spencer Cox - you not knowing the facts, but immediately going to the distrust or suspicion about HAART.

Wereas those of us who have seen and/or lived non-adherence disaster stories - would right away smell non-adherence, and wonder about depression, addiction, and suicide.

I hope that treatment program works out and furthermore hope you get some more social contacts. People can throw around a bit too casually a need for talk therapy when obviously its not always a health service that is available to everyone everywhere. So a web of social support is crucial.

Logged

“From each, according to his ability; to each, according to his need” 1875 K Marx

So that i dont feel like i Hijacked this thread too much, I will say it again RIP Spencer Cox.

mike

Since this thread is in the "Living With.." forum and not the "In Memoriam" forum, my perspective is that this discussion is absolutely relevant. Further, while I never met Mr. Cox, given what I have read of his I believe that he would welcome this discussion in his honor.

Anyway, my larger point is that my experience tells me that while after an initial diagnosis it may be beneficial to have someone that is familiar with HIV, but in the end any proper therapist should be able to handle whatever it is you throw at them. HIV has some special qualities, but it's also not so different than any other patient dealing with a life-threatening disease. You're just not going to find many therapists who are also dealing with HIV themselves, so I wouldn't use that as an excuse not to engage in long-term therapy if you need it.

I hope that makes sense. Therapy is a lot of work, and it's not just the quality of the therapist but it's also the amount of focus the patient brings to each session. And one thing I have learned, is that in terms of depression it comes and goes -- really deep depression is of course dangerous, but the other sort is something I think an HIV patient has to learn to live with somewhat, always being aware of it and with cognitive behavioral techniques you can learn to ameliorate the symptoms, hopefully without the aid of medication.

Now that HIV medications will allow most of us to live much longer lives, the mental aspect of the disease becomes a primary element in disease management, and unfortunately not every infectious disease and/or GP doctor focuses on this.

This post is packed with a number of significant insights that resonate with me, as follows:

- HIV Therapy Specialist: I am so grateful that I found a therapist that specializes part of his practice on HIV. While the average therapist should be able to help with HIV issues - they just don't have the experience, the context, the ability to connect the issues - such as ones anxiety of transmission relative to practical safe sex, relative to the stigma of disclosure. I believe that having a specialty is important for other therapy needs too - whether it is relationship counseling, adolescent counseling, addiction counseling, etc. -- HIV is another specialty, and having the right counselor can be the difference between success and more suffering.

- Therapy is allot of work: I believe that your get out of it what you put into it. I had one therapist (non HIV related) a number of years ago that gave me very detailed homework assignments, and held me accountable to completing them. She was very skilled at setting the expectation that you will do some work and breaking the tasks down so you knew exactly what to do week by week.

- I have yet to find a GP or ID that really focuses on the mental aspects of any condition - other than to "withold" prescriptions and refer you to other services. I think my doc is very enlightened, he recommends acupuncture, therapy, excersize, asks about your support network etc. - but it doesn't replace the need for therapy.

However, I do think in some cases people just get overdramatic. Sure, it is hard, no question about that, but it's not the end of the world. If you keep taking your meds and they don't give any nasty side effects (most don't), you are healthy, correct?

Well...to the person suffering from depression or anxiety it does not seem over-dramatic and unfortunately it may seem like the end of the world - and the issue isn't just that the meds are going to keep you alive. As Miss P pointed out earlier, it can be that a person doesn't feel "valued" by themselves or others, or worse that they are a burden to others. These issues aren't always necessarily due to HIV, but can be exacerbated with HIV.

I agree with Miss P's original point - this topic needs more attention.

Some people suffer from chronic depression, which I understand is a very difficult situation, difficult to diagnose and even more difficult to treat and cure.

However, I do think in some cases people just get overdramatic. Sure, it is hard, no question about that, but it's not the end of the world. If you keep taking your meds and they don't give any nasty side effects (most don't), you are healthy, correct?

So you're not gonna die, at least not from this. So that's settled. Stigma? Yeah it is hard but many other people suffer stigma...hell, HIV- gay people suffer from stigma every day, that is just the world and the society we live in. It may be getting better but it's a long way to go and we just have to develop thick skin and deal with this.

Pills every day? My stepfather takes them for his heart condition. Diabetics take insulin every day. I had a distant relative who was a hemophiliac...that's the nastiest thing I've ever seen. And people who have cancer never know if they'll be able to make it or not. You just have to open the newspaper on any given day to see how many people around the world are suffering all the time, every second.

Health is the most important thing we have and these new pills allow us this luxury that a lot of people who got infected in the 80's and 90's couldn't enjoy. And 5 years from now there will be even better pills and, who knows, maybe less damaging treatments and treatments that eventually may lead to a complete cure.

I know it's easier said than done, and I know people like Spencer or Miss P, who have lived with this for many years, have gone through terrible things due to the drugs that were available back then, but I still think people need to look on the bright side all the time. Once they get infected, they feel they are damaged goods, walking cliches, nasty people who did bad things and now are paying for it...but it's just a virus that ANYONE can get. Anyone. And we are just humans, we make mistakes all the time. We shouldn't be too hard on ourselves.

That's how I live my life. I do have bad days, but that happens to everyone.

Rockin,

With all due respect, you have never experienced clinical depression or severe anxiety, so you cannot understand that often it is something that cannot be controlled by willpower. Mental illness can affect your brain chemistry, cause physical disorders and the most difficult part is it skews your thinking and how you perceive reality. To suggest that many of the issues that face us pozzies, can simply have definitive answers, or that just by thinking the "right way" we can alleviate the depression is simply untrue.

I think folks tend to forget that each of us are unique and we all have varying degrees of the ability to cope with our struggles in life. I have also witnessed, how these attitudes impact people with major mental health issues, because they suggest that if you just tried harder, everything would be fine and again, that is often simply not true.

I know this, because I have suffered from clinical depression and anxiety for my entire life and if it were not for my psych meds, gifted therapists and my hard work, I'm sure I would have left this world a long time ago. Many of these fine folks know of my struggles with mental illness and nobody has ever suggested to me, that any of my mental illness is the result of my simply not trying hard enough.

This is why I have responded directly to your comments, because you may be unaware of how damaging some of your attitudes can be, to those who suffer from mental illness. Mental illness prevents sufferers from realistic appraisals of their world and their own situations. It interferes with normal thought processes and treatment often involves both medication and some form of therapy. It is not something that can be merely wished away or controlled easily and to suggest otherwise is simply unfair to those who suffer with mental illness.

This idea that some folks are prone to "drama" is both insensitive and cruel and it only adds to the stigma already felt by those who suffer from mental illness. It implies that the sufferer is consciously doing something that is causing the mental issues, and it denies the reality that mental illness can strike anyone at any time, no matter how they may feel about their life.

On Thursdays episode of Anderson Cooper Live, Anderson and guest co-host, Rosie Perez discussed Spencer and all the work he did for HIV. They spoke about his work with TAG, how he educated himself about the virus, and what a leader he was.

Clinical depression and axiety are important topics however, its not just those who have depression or anxiety that experience difficulties with HIV.

Even those who take their meds, and have no side effects from them, can have a difficult time. The fatigue, the other medical issurs, the stigma, disclosure, AND depression and axiety. Substance abuse issues, the cost of care, family, friends...i could go on forever. This disease is a full time job for many.

To say someone that may have difficulties is simply being "overdramatic" is not only completely insensitive its absofuckinlutely STUPID

And yes, I think part of it is going over the 40 year old mark. I also have a HIV-negative friend who fits this same pattern of freaking out over that age mark and starting a severe drug addiction late in life, when previous to that the most he ever did was drink alcohol in moderation.

I had a great friend that started meth around 40 and thinks he can do it recreationally. Eventually I think he got freaked out by all of my concern about it. He had previously told me he had a pot problem and a few months into our friendship he told me he thinks he drinks too much and wants to stop. That only lasted a few weeks. I never saw him drink too much and never saw him drunk, but recently before we ended the friendship he would have two martinis while fixing dinner, a glass of wine with dinner and I would make a strong drink for us while we watched a movie.

There are other things wrong that we were both at fault for, but he shut me out. Last time I saw him I told him I wanted to come over and talk, he said no, I showed up, but he didn't let me in. He had stopped answering my calls, texts and emails. Eventually I apologized, but it was not enough for him I guess. I have very minimal email correspondence with him. He was kind enough to accept that I put him down as a reference for something. i don't even know how bad he's gotten . Now 3 months plus later I miss him less and I am starting to feel resentment. I only wish the best for him and hope he stops doing that shit. I still have hope but I checked online and it's normal for meth addicts to not care about anyone or anything other than meth. I hope one day we can be friends again.

Logged

Pray God you can copeI know you have a little life in you yet. I know you have a lot of strength left.

To say someone that may have difficulties is simply being "overdramatic" is not only completely insensitive its absofuckinlutely STUPID

I was expecting this...I always get those reactions when I am completely blunt.

I'll repeat it again...some people suffer INDEED from chronic depression and anxiety and I do feel sorry and wish the best for them.

But SOME people actually love to wallow themselves in their self-pity and simply use any artifice and any excuse they can to justify their attitudes...be that their HIV+ status, their diabetes, their cancer, their divorce, etc etc etc.

In my opinion life is fucking TOUGH...my life was tough already waaaay before HIV. And I've always managed to survive despite all the odds. I've never been lucky in love, never had a nice, functional family, am 32 and still struggling financially and professionally and now have HIV to boot. My parents found out about my status and they worry every day about my health, even with all my explanations that I'm fine.

And YET, here I am, doing the best I can. I'm managing. I wake up another day and I'm healthy. It's a blessing. Even with all the heartache and pain. Even with all the bad news I read and hear every single day. Even with the fact that yet again, for one more day, I'm sleeping alone in my bed.

So if you think I'm being STUPID then that's your own problem, opinion and point-of-view. I'm living and yes, I've suffered from depression in the past. But I worked hard to overcome it, I refused to play victim and I refuse to be a victim of fucking HIV.

rockin,while i admire your ability to "cope", your lack of sympathy/empathy is sad.i can only hope you will be able to understand sometime down the road.this is not meant to put you down in any way, but i really don't think you get it yet.wishing you the best and hope your journey is fruitful.

I'll repeat it again...some people suffer INDEED from chronic depression and anxiety and I do feel sorry and wish the best for them.

But SOME people actually love to wallow themselves in their self-pity and simply use any artifice and any excuse they can to justify their attitudes...be that their HIV+ status, their diabetes, their cancer, their divorce, etc etc etc.

Rockin,

I think the difference here is the context of this thread -- I agree that there are people that wallow in self pity, however this thread is about people that have such issues that they severely "self destruct" (even to the point of death - which was the case for Mr. Cox). People that go that far have much bigger problems than self pity, it is much deeper and more complex (often a brain chemistry issue) and outside of their ability to manage the issues through self-will. I thankfully have only had a hint of that in my life - but I have been close enough that it has scared the shit out of me.

I for one don't think you are stupid in any way -- I think the comment glossed over the real issues in this thread and the majority of the comment was off target given the gravity of the topic - and thus the strong reactions.

None of us hit every target every time, and we have to keep trying - its all part of the process of growing and learning.

I was expecting this...I always get those reactions when I am completely blunt.

I'll repeat it again...some people suffer INDEED from chronic depression and anxiety and I do feel sorry and wish the best for them.

But SOME people actually love to wallow themselves in their self-pity and simply use any artifice and any excuse they can to justify their attitudes...be that their HIV+ status, their diabetes, their cancer, their divorce, etc etc etc.

In my opinion life is fucking TOUGH...my life was tough already waaaay before HIV. And I've always managed to survive despite all the odds. I've never been lucky in love, never had a nice, functional family, am 32 and still struggling financially and professionally and now have HIV to boot. My parents found out about my status and they worry every day about my health, even with all my explanations that I'm fine.

And YET, here I am, doing the best I can. I'm managing. I wake up another day and I'm healthy. It's a blessing. Even with all the heartache and pain. Even with all the bad news I read and hear every single day. Even with the fact that yet again, for one more day, I'm sleeping alone in my bed.

So if you think I'm being STUPID then that's your own problem, opinion and point-of-view. I'm living and yes, I've suffered from depression in the past. But I worked hard to overcome it, I refused to play victim and I refuse to be a victim of fucking HIV.

This virus is my bitch, not the other way around...and I'm not sorry.

I think most people who have suffered from depression have at some time either told themselves what you mention above, or have been told this by others. It's a dangerous denial of sorts and keeps one from getting the help they really need.

But SOME people actually love to wallow themselves in their self-pity and simply use any artifice and any excuse they can to justify their attitudes...be that their HIV+ status, their diabetes, their cancer, their divorce, etc etc etc.

Wow, putting together cancer along with diabetes and HIV....tell that to a cancer patient and see how they react.

I was expecting this...I always get those reactions when I am completely blunt.

I'll repeat it again...some people suffer INDEED from chronic depression and anxiety and I do feel sorry and wish the best for them.

But SOME people actually love to wallow themselves in their self-pity and simply use any artifice and any excuse they can to justify their attitudes...be that their HIV+ status, their diabetes, their cancer, their divorce, etc etc etc.

In my opinion life is fucking TOUGH...my life was tough already waaaay before HIV. And I've always managed to survive despite all the odds. I've never been lucky in love, never had a nice, functional family, am 32 and still struggling financially and professionally and now have HIV to boot. My parents found out about my status and they worry every day about my health, even with all my explanations that I'm fine.

And YET, here I am, doing the best I can. I'm managing. I wake up another day and I'm healthy. It's a blessing. Even with all the heartache and pain. Even with all the bad news I read and hear every single day. Even with the fact that yet again, for one more day, I'm sleeping alone in my bed.

So if you think I'm being STUPID then that's your own problem, opinion and point-of-view. I'm living and yes, I've suffered from depression in the past. But I worked hard to overcome it, I refused to play victim and I refuse to be a victim of fucking HIV.

This virus is my bitch, not the other way around...and I'm not sorry.

Kudos for you to be able to kick HIV's ass. So what happens when it starts winning? What happens when someone's cancer is winning? Just because you are able to handle your illness at this particular moment in life does not mean that everyone else with the same (or not) condition is also able to. And if they can't that does not mean they are weak or just need to buck up.

There is such thing as compassion and understanding, even if you have not experienced someone else's pain. When someone decides to stop taking their meds with full knowledge that the result will be death that says a lot about their condition. Yes depression may very well play a role, but sometimes people get tired, they get fed up, and they throw in the towell.

Kudos for you to be able to kick HIV's ass. So what happens when it starts winning? What happens when someone's cancer is winning? Just because you are able to handle your illness at this particular moment in life does not mean that everyone else with the same (or not) condition is also able to. And if they can't that does not mean they are weak or just need to buck up.

There is such thing as compassion and understanding, even if you have not experienced someone else's pain. When someone decides to stop taking their meds with full knowledge that the result will be death that says a lot about their condition. Yes depression may very well play a role, but sometimes people get tired, they get fed up, and they throw in the towell.

Hey Bug,

Thanks for the above, because it illustrates that there will always be things that are beyond our control. What I find disappointing about Rockin's comments, is his idea that he can defeat anything and if he can do it, then why not everyone? Many of us here, could write volumes about the challenges that we have faced after living for decades with HIV.

Rockin,

Get back to me in about two decades and let me know how that lack of empathy and compassion has worked out for you. Your condescending attitude is just not conducive for a support forum. There are folks who DO EVERYTHING RIGHT and yet they still die. Please explain to me what they did wrong? You have no idea, how painful it can be, for readers who have tried everything, yet they are still losing the war.

To suggest they have somehow failed themselves, is beyond condescending, it's downright cruel.

I had heard of Spencer's death when it happened but never read the whole article. Strangely because I was dealing with a friend who decided to stop taking meds around the same time. In the friend's case it was a misguided belief that the stopping of meds would start a more precipitous drop in health than the reality. In essence he was looking for a quick way to change his situation. It took some help from another (not me) to show him that wasn't the case.

There's been a lot of good conversation threads here. My own thoughts on some:

Having suffered from deep debilitating depression, and substance abuse myself in the past I would never pass judgement on those who suffer from it. Sometimes (Many times) the person suffering is incapable to pull themselves out and their brain chemistry is simply warped. You can't tell them to get it together. It just doesn't work like that. There are ways to help them both verbally and in action - but it relies (in my opinion) on getting them to somehow break from their current reality - and damn that's a hard thing to do; I never seen it done by another telling them to snap out of it.

I've also felt at times in life stuck and immobile. My attitude and outward presence towards others might have come across as wallowing in self-pity because I was. But here's the thing - Telling someone that they are wallowing in despair is about as helpful as telling them to look on the bright side of things. It just doesn't solve the problem going on inside the person's head. In some cases it only makes the person feel that more isolated, stuck, and unable to change their situation. Like the above point regarding clinical depression - I think breaking the person from their current perception of reality is the only way to break them out of the mood, and you simply can't do that by expressing impatience at their process or disdain for where they are - though as already mentioned those things can further isolate them from help.

In the case of Spencer - I didn't know him. But I do know people who have worked in HIV and AIDS causes and burnt out. There are two people I am specifically thinking of and both experienced steady declines in health. Was it started with mental exhaustion? Probably. Could that have then turned into depression and suicidal thoughts - who knows? In their case, neither did. I also don't think (or know of at least) that either party found drugs or even alcohol as an escape mechanism, but if they had the situation might have been much worse. As it is now (or the last I spoke with either) is that they are both pretty much homebodies who don't go out or engage with the world much while before the burn out were active, incredibly energetic, and engaged people.

I also know of people (both poz and neg) who at some mid point in life (or later than mid point) went on a self destructive binge. Sometimes it can be harmless, but when you involve things like drugs - the chances of recovery are harder. When someone is young and poz and has access to meds its easier for them to screw up. I'm not sure about the physiology (though I gander younger people are generally healthier) but I do know psychology and somehow youth in general is more resilient.

I screwed up so much of my own youth - but I was always able to say, "I can still..." If I now make some of the mistakes that I did in my youth and lost a few years, months or even weeks - the likelihood of me being able to recover (work, health, social standings) from that is not so good.

The loss of being able to think "I still can..." can speak volumes in a person's head and in their subsequent actions.

Clinical depression and axiety are important topics however, its not just those who have depression or anxiety that experience difficulties with HIV.

Even those who take their meds, and have no side effects from them, can have a difficult time. The fatigue, the other medical issurs, the stigma, disclosure, AND depression and axiety. Substance abuse issues, the cost of care, family, friends...i could go on forever. This disease is a full time job for many.

To say someone that may have difficulties is simply being "overdramatic" is not only completely insensitive its absofuckinlutely STUPID

Boy, have you ever come a long way since first popping up here.

And to Joe (once again): SALUTE. I know when I went through my absolute worst with depression, being told to "try harder" and "pull myself from my bootstraps" and on and on just made me spiral down further and faster.

And to Rockin: Maybe you feel that some folks are running away with what you posted, but in rereading this thread it almost seems that these last few posts contradict the ones you started it out with. You kinda went from decrying the stigma of mental health to sounding like one perpetuating the stigma.

And to Wolfie: I agree that I hope this thread doesn't flame itself into oblivion, but man this is one of the best, most substantial threads to come down the pike around here in awhile. Finally - at last - people are openly and unashamedly addressing the forum with their mental health issues.

There's been about half a dozen of us on here who have always tried to prompt people to make use of the mental health forum. This discussion isn't happening there, but it's happening SOMEWHERE on here.

Geez some of you are extrapolating a bit too far from what Rockin wrote.

It may be, that some of us are tired of condescending comments, from folks who have never lived with the horrors of mental illness. I can't even begin to count the times that I have been told to "snap out of it", or "things are not that bad, so get a grip." As Iggy so beautifully stated, that's just not how mental illness works. And when I read posts that show the same insensitivity to those who suffer from mental illness, I become angry, because I know the effect that such comments can have, on those who are doing everything in their power to overcome these obstacles.

I made the comments I did, because this is not the first time that Rockin has made such insensitive comments, regarding the challenges that others face. Some folks need to be told directly that what they are saying does hurt others. Seeing that this is a support forum, I try and consider the feelings of all participants and that includes readers as well as posters.

And to Rockin: Maybe you feel that some folks are running away with what you posted, but in rereading this thread it almost seems that these last few posts contradict the ones you started it out with. You kinda went from decrying the stigma of mental health to sounding like one perpetuating the stigma.

Thats true.

I find it hard to follow the argument in this thread.

But I think rockin was just telling us his own boot strap psychology and its a pretty common one. He said he feels that there is serious depression out there. I dont think he said stuff to condescend.

Maybe its not helpful or respectful to ponder the line between two supposed camps of people: those who "wallow" (and thus are judged a bit egotistical and selfish) versus those who are "mentally unwell" - in a memorial thread about a guy who was mentally ill.

There's another thread going in poz forums with similar judgements about mental health being lobbied about.

I think Cox's story unsettles and bewilders and frightens many of us.

Rockin's post reads (to me) like a sort of manifesto with some bravado and drama but basically its "there but for the grace of God". There may be clumsy insults in it but how about pointing them out with arguments, and not an equal dose of drama and character assassination.

Logged

“From each, according to his ability; to each, according to his need” 1875 K Marx

Phrases like "buck up", "get a grip", snap out of it", etc. IMPLIES that one believes that an effort is not being made. It is painful to hear and only reinforces negative self image thinking.Those phrases also can PREVENT someone from seeking professional help.

Anger expressed about such comments is justified and is a very important conversation to have, and continue.

Another phrase that gets me angry is "develop a tough skin".I prefer that my "skin" remain rather sensitive. It keeps me more "in touch" with myself and others.

I understand that it is difficult, and maybe impossible for someone to comprehendthe challenges of mental health issues until you face them yourself.There are even different degrees of difficulty that each of us face.

The thoughts expressed here reflect honest reactions to some of Rockin's statements.I believe it has actually helped move the topic more out in the open.I can only hope that others who hold the same viewpoint have been able to better understand the issue after reading this thread.

I don't believe that Rockin intentionally meant to do any harm, but the comments were written never the less.

There may be clumsy insults in it but how about pointing them out with arguments, and not an equal dose of drama and character assassination.

What thread have you been reading?? I only saw one instance of a comment that might match what you have said here.... Rockin responded ONLY to that one -- he never addressed the cogent arguments by Joe and others. He simply dug his heels in and reiterated his position.

Mental illness is probably the most difficult thing to understand for those who have not had to experience it -- I have been beyond fortunate in that regards, but it runs deep in my family. It took my grandmother's life, ruined my parents marriage, stole my youngest brother's ability to function........... why -- because everyone (myself included, in my brother's early case) took the approach that they needed to "toughen up". I wish I could undo the past, but I can't. What I CAN DO -- is try to help others see the short-sightedness that downplaying mental illness can bring. It is an illness that really can not be treated by oneself -- it requires professional assistance, just like any other serious illness.

The stigma attached to mental illness is mind-boggling to me now -- but I know that I contributed to it in years past. Rockin is doing the same thing in this thread. He may not "mean to do it" -- he's not a bad person -- he's just a bit mis-informed and/or naive. Excusing the behavior only enables the stigma to continue -- please think about that Mecch.

What thread have you been reading?? I only saw one instance of a comment that might match what you have said here.... Rockin responded ONLY to that one -- he never addressed the cogent arguments by Joe and others. He simply dug his heels in and reiterated his position.

Mental illness is probably the most difficult thing to understand for those who have not had to experience it -- I have been beyond fortunate in that regards, but it runs deep in my family. It took my grandmother's life, ruined my parents marriage, stole my youngest brother's ability to function........... why -- because everyone (myself included, in my brother's early case) took the approach that they needed to "toughen up". I wish I could undo the past, but I can't. What I CAN DO -- is try to help others see the short-sightedness that downplaying mental illness can bring. It is an illness that really can not be treated by oneself -- it requires professional assistance, just like any other serious illness.

The stigma attached to mental illness is mind-boggling to me now -- but I know that I contributed to it in years past. Rockin is doing the same thing in this thread. He may not "mean to do it" -- he's not a bad person -- he's just a bit mis-informed and/or naive. Excusing the behavior only enables the stigma to continue -- please think about that Mecch.